Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Melinda, When life hands you lemons...Just remember, these two children will understand each other in a way most people with cf just don't have. They will share treatment, successes, failures, encouragements...I have one with cf and one with ADD and Tourette's...they do not understand each other at all. At 22 and 19, they still have a raging sibling rivalry that will only end when one moves out...provided that one doesn't come back to visit TOO often. Dori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Hi Melinda, I am new to this list but wanted to respond to your email. You have gotten some great support and advice from so many others...I hope it will help if I add to it. I have two children with cf, a son who is 22 and just recently married and my youngest, a daughter who is 18 and a senior in high school. We also have an older daughter 24 wocf. Our son was diagnosed at 13 mos. old. He had many of the symptoms of cf, but since we had never heard of it and knew of no one in our families with it we had a time convincing doctors that something was indeed wrong with him. I had been told several times that its okay if he's not as big as other babies his age, but I KNEW something was wrong from the first time they brought him to me. He was very healthy, other than ear infections and once we started him on enzymes he grew pretty well too. By the time he was 3 I was coming to terms with the fact he did indeed have cf...altho I know I was in denial for quite some time because he wasn't sick like they told me he would be. I was only 24 years old...felt much too young to do something so final as to have my tubes tied...but had finally decided to do it the winter he turned 4. I did have it done, but it was after giving birth to the sweetest little girl. I was very upset when I realized I was pregnant...I thought we had been so careful. I had about 2 weeks of serious questioning and wondering why this would happen again. But I knew in my heart whatever this child had, we had been given her for a reason...we did not plan her. I have never thought of her as an accident...she was our surprise...and a wonderful surprise she has turned out to be. We found out for sure when she was 5 mos. old that she did indeed have cf. There have been challenges to having two wcf, but they are very close and have been their whole lives. They have both been very active in sports...that seems to make a difference for a lot of people with cf. All of our kids are close, but I see a bond between my two wcf that is not there with their older sister, and there is something there that even we as their parents don't understand sometimes. No one can tell you how their disease will progress, as no two are alike, even when you do the same treatments...whatever for each. My daughter first cultured cepacia almost 5 years ago...she has two strains of it...how...where... we do not know. Believe me we have wracked our brains on that one. It did come a few months after her first hosp. so that was/is suspect to me. Our son has cultured it for about 2 years now. Very scary....I cannot really explain well how it feels, but I can say, so far we have seen no ill affects from it and just take it one day at a time...cannot think too long or strongly about the whatifs... I hope this was okay to write in like this...just looking for support and help as you all seem to have found with each other. Knowing cf as you do, thru your sister and your little son, I'm sure you'll make the right decision for you and your family. I just know in our case they have been good for each other in spite of the negative that goes with cf. Take care, lisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 , That was such an nice email to read. I am glad your two children with cf are doing well. What sports did or are they active in. Mom to Elliot 11mths wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Which are you refering to? I have 2 children but only one has CF and they aren't in any sports. from PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 , they both play basketball, as I said my daughter is a senior, she is capt. of her team and a good player. She also plays volleyball during that season. She has plans to go to college this fall. My son ran track and was a starter throughout high school on his basketball team. He still plays on the adult team. That is the main sport around here. from AK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Hey, , welcome, that is a wonderful, and inspirational story. I'm glad your kids are doing so well, despite the cepacia (yes, scary, I can't imagine how difficult it must be to deal with that -- but I have read that it doesn't have a bad course for everyone). I have a girl, 3 yo, no CF, and a boy, 16 months old, with CF, and have wanted a third but feel guilty and scared about it. I don't want one yet, just *maybe* sometime in the next ten years. Where in AK are you? We lived in Fairbanks for a year, actually, was conceived there. *&~*&~*&~*&~*&~*&~*&~*&~*&~*&~&*~*&~*&~&*~*&~*&~&* mama to , 16 months old w CF and 3 years wo CF > From: nchny@... > > , they both play basketball, as I said my daughter is a senior, she is > capt. of her team and a good player. She also plays volleyball during that > season. She has plans to go to college this fall. My son ran track and was > a starter throughout high school on his basketball team. He still plays on > the adult team. That is the main sport around here. from AK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 She just signed , and has two with cf! Melinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 Dori, I have boy and girl twins who will be 16 on February 11th. Becky has CF and has ADHD, Tourette Syndrome and OCD. I'm just curious how " raging " is the sibling rivalry?? My twins absolutely hate each other and it tears me apart. They are so mean to each other. resents the fact that Becky gets all these high calorie foods. I have explained the reason but he still thinks I am playing favorites. He also doesn't understand that Becky has a social life which means she sometimes needs a little money to do things with her friends. I have told to try to develope some friendships at school or get involved in some activities and he could do things also. Is it really going to take one of them moving out for things to be peaceful?? Bev M. in Elk Grove, Calif Dori Ownbey wrote: > > Melinda, > > When life hands you lemons...Just remember, these two children will > understand each other in a way most people with cf just don't have. > They > will share treatment, successes, failures, encouragements...I have one > with > cf and one with ADD and Tourette's...they do not understand each > other at > all. At 22 and 19, they still have a raging sibling rivalry that will > only > end when one moves out...provided that one doesn't come back to visit > TOO > often. > > Dori > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 Melinda.. I'm so sorry ...I cant imagine the fear..But you are a wonderful MOM and will continue to Strive with your children no matter what comes your way.. You are prepared now . I wish you a healthy and safe delivery. Stein...mom to CF (20 mo) & Tori wo/CF in Mass RE: in a state of shock Well, my worst fears came true Thursday. Amnio results revealed that this baby too has CF. I, of course, knew the chances, but really believed, oh, not this time, after all we have gone through with this pregnancy and all the failed tests, etc., but he does, and that's the bottom line. Took me two days of sitting down to the computer, and not being able to type a single word. I guess a little denial. Had an ob appt yesterday, and she said we still had two weeks to terminate - how in the world could I do that. I am 5.5 months pregnant and the baby can hear my voice now, not to mention I have the sweetest, most beautiful 3 year old in the whole wide world LIVING with CF and a beautiful successful sister that is turning 26 LIVING with CF. It still doesn't help with the disappointment of the results, and the fear of my, now two, children not surviving their CF. I know I will have many questions for you brave people out their caring for two or more wonderful children with CF, but for now I just can't. I just can't believe this is happening. Melinda Quote Link to comment Share on other sites More sharing options...
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